Delia's Intersex Journey
I.Y.A thank Delia for sharing her journey with us on International Intersex Awareness Day 2016.
I was born in rather conservative times in 1961 at Papakura Maternity Hospital, Auckland, New Zealand the eldest of three daughters. I appeared to all outward appearances to be typically female however this situation was questioned when at 17 ¾ years of age it was noticed I had little sexual maturity and had not menstruated unlike my younger sisters who had menstruated years earlier. My mother took me once again to the GP and this issue was addressed and a karotype blood test was one of the tests organized. To my parents and Doctor’s great surprise the result of the karotype revealed I had XY chromosomes which meant I was genetically male! I remember my GP ringing after hours to talk with my parents and they were informed I needed to see an Endocrinologist. So soon afterwards I was sitting in front of my Endocrinologist whom I was to be a patient for many decades until he retired. At this first consultation he observed I had had a hernia operation as a baby and he was very keen to get hold of these early records but unfortunately they were no longer available. He performed an internal examination which I found embarrassing and this revealed to him that I had a vagina but no cervix, womb or ovaries. At this first consultation of many I was informed with my mother present I was infertile and would never be able to bear a child. I was tearful and distressed at the time on hearing this news but I decided there wasn’t much I could do about this state of affairs and I would have to stoically accept this.
At the following consultation I was informed by my Endocrinologist that I required an exploratory operation for him to find out what is going on. In reality this operation was not exploratory but in fact a gonadectomy to remove my internal testes and was done without my knowledge. Looking back I recognise that my Endocrinologist and parents were protecting me. In the 1970’s little was known about the gender spectrum and diversity and society held firmly to male and female binary. Hermaphrodite was a term that was banded about then which is terribly misleading and today no longer appropriate.
After the gonadectomy operation I was informed that I would need to start estrogen and I would need to take this for life and I would undergo sexual development. I observed my hips widen however I was still acutely and painfully aware of my “difference” – the scant pubic hair and no underarm hair, little breast development. I was confused about this but as was in keeping with my nature at the time I stoically accepted this with no complaint and little inquiry. I was very young and back in those days it wasn’t appropriate to question medical professionals. They knew best!
At 19 years of age after starting my first relationship I was acutely self-conscious of my flat-chestedness and I suffered low self-esteem and I thought new breasts in the form of breast augmentation would be the ticket! I saw a plastic surgeon and he provided me with Dow Corning silicone implants. The operation was painful and I lost breast sensation but I was pretty happy with the results at the time. Unfortunately these implants rupture and they were removed in my early thirties and I decided not to replace these but accept the body I was born with.
Looking back over my teenager years they were particularly awkward and difficult days. I felt different from my peers. I recognise I was asexual and agender and living in a pre-adolescent body and I must have looked a little different to my peers. I struggled to fit in and due to low self-esteem and reserve I failed to develop close female friendships. I was naturally guarded around subjects like tampons, menstruation, boys. I avoided changing room situations where my difference would be obviously apparent. I also suffered from anorexia and eating disorders and I have very low self-esteem and pretty much was a loner. Fortunately at that stage I was close to my father and we shared a love of tennis and long distance running which I excelled at and this was a great source of release from my internal angst.
When I was 21 years of age my Endocrinologist had decided it was the right time to advise me of the reason for my infertility. He explained I was genetically male with a syndrome called testicular feminizing syndrome it is now called by a gentler name - complete androgen insensitivity syndrome (CAIS) and that due to my receptive sites over my entire body I was unresponsive to androgens (testosterone). Due to this reason at six weeks when hormones flood the fetus invert I developed along female lines (which incidentally is the default sex). So I was in fact super-feminized as woman have 1/10th amount of testosterone produced by adrenals which I do not respond to hence the reason for no secondary body hair, soft skin, no acne etc. He elaborated that testosterone had no virilisation response in my body and in effect was redundant. All this was a revelation to me but on reflection it pretty well fitted in with all that I knew about my body.
I recognise it must have been a trying, difficult for my parents having one daughter that was different. We were all told that the incidence of this is “one-in-a-million”. I believe in the 1970/80’s this may well be what they believed but I have learnt it is more like somewhere between 1:25-100,000. I have found differing statistics so I am unsure of the true incidence.
One of the most disappointing aspects of my medical treatment was that I was never referred for psychological support and more importantly connected with peers for help and counsel from CAIS women who share similar experiences. Many times I appealed to my Endocrinologist to place me in touch with someone but I was told I was the only person in New Zealand with my condition. So until recently I have lived in secrecy, shame and the fear of disclosure and possible prejudice and worry about what “others may think".
It has been very much a lonely, isolating journey not having anyone to share this with and believing I was the only one in New Zealand until at 54 years of age I felt a strong urging to look online to find out more about my condition and to see if there was any contact group or information about my syndrome. I was very nervous to look online as computers keep records of searches and I was worried that my husband may find out my secret and I was scared of being rejected however this has not happened. In fact straight away I found a group in Australia named AISSG which had loads of information about androgen insensitivity and contact details and I tentatively made contact with Bonnie & Phoebe Hart. I was so excited. I also was very surprised and delighted to find out there was the Intersex Trust Aotearoa New Zealand (ITANZ) and I made contact with Mani Mitchell. So from feeling alone I now had peers and allies I was over the moon! The other big development was advising my husband I was intersex. I was very nervous but decided I was going to bit the bullet so to speak after reading other intersex women like myself married with lovely husbands. I was hoping he would accept and this is what happened. He said to me, “I’m the same person I married and fell in love with and nothing has changed”. The support of my husband the freedom from fear has strengthened our relationship and I have been released from all my systemic anxiety and fear. I feel liberated and loved and in turn I have been more accepting of myself.
In March 2016 Mani Mitchell urged me to attend the ILGA Oceania Conference in Wellington and this was a fabulous introduction to the LGBTIQ community. A community that I belonged to! I found out that there are 46 differing intersex conditions and that we were part of the LGBTIQA rainbow community. I attended the conference along with Eliana Golberstein (we shared a hotel room) and bonded as intersex friends. We soaked up the atmosphere and thoroughly enjoyed attending the workshops and hearing the Lecturers talk about all sorts of issues human rights, health, fertility, etc, etc. Eliana and I became close and we talked about what we learnt and for the first time in both our lives I felt a bond (unlike typical binary women) and we shared some personal intimacies. I came away from the ILGA Oceania PROUD conference with a real feeling of empowerment and a sense of pride in the diversity of the LGBTIQ community and the fact I was part of this.
Then in August 2016 I decided it was long overdue and timely for me to actually meet other women who had CAIS. So I travelled to Melbourne and attended the AISSG conference organized by Bonnie & Phoebe Hart (see photograph above). My initial reaction on walking into the room of other CAIS woman was my delight to see there were quite a few ladies around 6” in height as myself. I felt like I was just one of the gang! Straight away there was a bond because we shared a commonality and a similarity of experience. I was heartened to hear these CAIS intersex women talk about similar experiences and we connected on so many levels. There were quite a few tears, painful reminiscences of trials and tribulations. Some of the fears being disclosure, rejection, worried about others may think. We also talked about sex, sexuality, relationships. Following the conference I was fortunate to spend an entire day until 11pm with Bonnie and Phoebe. That evening Phoebe was a guest speaker at Melbourne University to give a talk about her experience as an CAIS intersex woman. It was a special occasion and we were invited guests for dinner. We donned academic cloaks and walked into a very large dining hall with what appeared 100 or so university students, professors, teaching staff . The hall was gothic and so very similar to the school hall in Hogwarts School in the Harry Potter movie you would think it was identical. I was honoured how much the students were interested and engaged to hear our stories.
Over the past year I have developed a real passion for sharing and advocating for the intersex and educating the public. I have found few people know what intersex means. On the occasions when I have shared I get the response, “I have never heard of intersex what is it?” They are also very surprised to learn I am genetically male and it takes a fair amount of explaining. So my hope is that by sharing with the general public this will help to de-stigmatize intersex and one day it will be seen as just one part of the natural and normal human diversity.